We’re Looking for a Few (More) Good Men!
A year ago, we had a vision that we would begin to formalize the adult voice of our Duchenne community by convening a leadership group comprised of young adults and adults of accomplished and passionate men who also had Duchenne and Becker and were willing to lend their time and talent to our community. In my wildest expectations, I could not have dreamed that this ‘vision’ would have yielded the momentum that our PPMD Adult Advisory Committee has created in just one year.
On January 15 of this year we introduced you to an incredibly special group of people, PPMD’s Adult Advisory Committee. The PPMD Adult Advisory Council (PAAC) serves to ensure that the voices of adults living with Duchenne and Becker muscular dystrophy are reflected in PPMD’s legislative, policy, and program activities. PAAC members serve in a formal advisory capacity for their respective term and maintain leadership over a PAAC initiative throughout that term; PAAC initiatives are determined by the PAAC membership and PPMD Executive Team.
The PAAC held their first in-person meeting on February 21 right at the start of PPMD’s Annual Advocacy Conference. There aren’t words to describe the excitement, passion, and commitment felt that day and throughout the conference.
But it wasn’t just a bunch of talk! Since that meeting, the PAAC has:
- Submitted comment on the MDCC Action Plan for the record.
- Provided input for a Transitions Guideline tool being submitted for publication in the Annals of Neurology.
- Helped to design PPMD’s national assessment of patient and caregiver preferences in function as applied to robotics.
- Visited Hill offices supporting PPMD’s Advocacy Agenda in February, including MD-CARE Act implementation.
- Started blogging! Read PAAC member,Jen Bauer’s latest blog here.
- Ben Cumbo testified at a Congressional Briefing on behalf of the PAAC.
- Buddy’s mom testified at another Congressional Briefing on behalf of PPMD around the Social Security barriers that the PAAC has identified as a key policy issue.
- Two members have served as working group members on the CDC Care Considerations Expansion effort.
- One member was nominated by PPMD as a public member of the federal Muscular Dystrophy Coordinating Committee.
- Colin Rensch was featured in press around his involvement in the PAAC and Hill events – helping us to raise awareness of Duchenne and the issues that we are working on.
- One members joined me at the annual Disability Policy Summit in DC on April 13-15, sponsored by AAPD and the Arc.
- Several PAAC members led the planning committee for PPMD’s National Transitions Meeting; Living Duchenne/Becker, which was held in Washington, DC in June and held in conjunction with the Annual Connect Conference
- PAAC members participated in the June PPMD Advocacy events on Capitol Hill where we championed the 21st Century Cures Act, Senate Innovation bill, and PPMD’s Patient Focused Impact Assessment Act (PFIA) S. 1597
- Mario Damiani and Alan Chaulet have worked with other experts to author a Home Modification Guide that will be published and made available to our community later this fall.
- Matt Petrusko and Kanch Randhawa worked together to develop a Ventilatory Considerations Guide to serve as a companion to existing clinical and research literature (the PAAC assessment was that the perspective of the ‘expert end-user’ was absent from many of these existing publications)
- And more!
Our 2015 PAAC was amazing — and we all had a great time too!
Apply for the 2016 PAAC
Due to the natural rotation of the committee and schedule demands and life… we are now seeking applications for some new members to join our amazing group and add to the momentum that has started. Below is information about the PAAC and the role that we ask you commit to, and the expectations of PAAC members. Interested applicants should submit materials to me at email@example.com.
- PAAC members are each asked to serve either a 1 or 2 year Term. At the conclusion of your term, you may submit for renewal. Only two consecutive terms may be served.
- 2016 Term begins January 1, 2016. An introductory call/webinar will be held for all 2016 PAAC members in the first week of January.
- PAAC members will be required to participate in a Monthly hour-long call/webinar (to be held on same day/time each month). Each PAAC member is expected to attend at least a minimum of 9 of the 12 calls.
- The PAAC will be responsible for facilitating/ executing projects as determined by PAAC. PAAC members may also serve as representatives on special councils/ projects such as robotics initiatives, a state resource for Adults with Duchenne, a state pilot of a ‘personal navigator’, ADA workbook, NIH Council, Industry data safety monitoring boards, etc
Individuals interested in applying for consideration to the 2016 PPMD Adult Advisory Committee should send he following information the Annie Kennedy at firstname.lastname@example.org before October 23, 2015.
- Name, Address, Email, Phone number, Date of Birth, Diagnosis
- Brief Biography; to include any relevant advocacy roles held in community organizations, school, federal agencies
2016 promises to be a historic year for the Duchenne/Becker community with opportunities in clinical care, legislation, policy, research, and education as never before – but the challenges that lay ahead of us are also more complex than ever before. We look forward to embracing these opportunities and challenges with your guidance, expertise, and vision. Please consider joining us!